Monday, February 15, 2010

The Losts Posts and Our 360 Degree Experience

I've just posted all my "lost posts". Drafts I started and never finished. Thoughts I wrote down but for some reason..just didn't want to share in this forum.

One of which was a letter I composed to Ava's Neurologist. I never had an opportunity to give him that letter...because only a few short days after that Ava ended up at Hasbro Children's Hospital for one of the most difficult stays we've ever had.....and we've had many. So lucky for me...I just told him face to face.

She was having 300+ szs per day and as soon as they saw her in the Clinic..she was admitted immediately. Banzel (Rufinamide) proved to be an absolute disaster for her after 8 terrible days. So to make a long story short...she is off the Diacomit (Stripentol) that she had been on for the better part of 2 years and began Zonegran (Zonisamide) along with her regular regimen of Topamax (Topiramate) and Clobazam. We also re-initiated a Modified Atkins diet.

It seems as though...in two years time we've had a complete 360 degree experience and we are now back to square one. Back to the same exact place we were then...at 2 years old.


Desperate.


Since leaving the hospital we've had a week or so honeymoom with this new regimen. Little to no seizure activity....a cruel trick this game plays on us from time to time. I must say.....we've had other honeymooms before.......


6 weeks with ACTH......Like the first honeymoom...just when you start to relax it's time to go back home....and boy did we ever!


6 weeks with Keppra.....the unplanned cruise type....your so happy to get away that you don't even think about going home until it slaps you in the face.


Then a quick little trip with the Ketogenic Diet.......the weekend get away.


but this one.............


this one was like a trip to Paris. Something we saved up for a long time. I don't know when I'll have to go home, but I want to stay as long as I can. I want to see the whole city, every street every corner. I want to memorize everything so I will never forget...in case we never get back. I need to make one more memory, take one more picture so I can remember it forever.......because eventually..........we must go home.

Slowly but surely the seizures are creeping back every day, but it's these little honeymooms that keep me going. Striving to find a way to hold on to a stable medical place for her. Although....I must admit. In the two weeks of this honeymoom a harsh reality came down on me like a ton of bricks.

Giving all of my time and energy into fighting to get her seizure free has given me little time to think about what will happen when she is.

If she ever is.....

These past two weeks have given me a lot of time to think about just that.

Especially when I came across some preschool projects Christian did when he was four. Then the thought crossed my mind.....what if Ava can never read......

When the seizures are at bay, and you have what you think you want...what has been THE most important priority in your life for years...you are now scrambling to pick up the pieces of what is left of your baby. After this "thing" has taken all of the best parts.

The most precious ones.

The ones I wanted.

The ones that were OURS to enjoy and cherish.

The most important ones she needs to live a normal life.

the Epilepsy stole those away from us.....and I'm just soooo mad, but more than that, I'm heart broken down to the very core of my being.

I feel like I'm morning the loss of all the dreams I had for her.....so I can make a place for new dreams.

And this my friends appears to be much harder that simply fighting seizures. That I know how to do.

So to all my friends in a different place in this journey then us. I understand why you are still struggling emotionally. This is so much more that just getting your child free from Epilepsy. Its picking up the pieces.

Dreaming new dreams.


Letting go.....


Holding on.....


and so much more.


Even though we are far from ever being seizure free.....I'm beginning to realize being seizure free might not be as easy as I thought after all.

11 comments:

Sophie's Story by Elaine said...

My heart skipped a beat when I saw that you posted. Since it had been so long, I did not know what to expect. Then I read all of your post and now I am heartbroken. On so many levels and for so many reasons.

Whatever happened with the encounter with Dr. Neuro? Is Ava going to get a MEG scan? By the way, Sophie's EEG, PET scan and MRI were also not impressive when it relates to surgery. We were turned down twice for surgery (by Dr. Chugani) before they finally said yes. Sophie's local neuro never thought surgery was an option for her.

labonte4 said...

We've presented the MEG scan to my insurance company and I haven't heard back yet. We will have to go to NYU because Mass General won't sedate pedi patients. I'm almost sure they will deny me...then I have to count on my Neuro to push for it.

He said he doesn't "oppose" the test, but still feels it won't yeild any useful info. It's like shoveling sh** against the tide in RI. They like meds here...nothing scary either.

Its been a nice breather to see her seizures cut down a little and now that shes off all those crazy meds...shes more like my girl. The one I know, but don't get to see to often.

This is turning out to be such a fight. Ava's EEG is so generalized its hard trying to get any doc. on board to explore surgery. Weve tried everything else....so why not!

Jonathan said...

This post is one of THE most beautiful I've ever read. Thank you, B, for spilling your soul.

xoxo

...danielle

Fawn said...

Sending you hugs. I really don't know what else I could possibly do or say.

KC's Mama said...

Wow, this pretty much sums it up. I hope that someday things get easier for you...and for Ava. We just got kicked again last week when KC was diagnosed with PPD-NOS (Autism spectrum) and Disruptive Behavior Disorder NOS. I knew he was on the spectrum, and I knew he had behavior problems, but it was so hard to hear regardless. For the first time in a really long time, the seizures are not the worst thing. I am finally having to confront the fact that this is not going away, and in fact it's getting worse. Ok, sorry, didn't mean to spill my guts now. But thanks for giving my thoughts some words :)

Karen

www.caringbridge.org/visit/kcmahoney

JSmith5780 said...

D's been keeping me updated on you, especially when I see big gaps even on your FB.

I am glad there was a small window of respite, enough that you got up the courage to face the neuro and push for more, because, really, what does Ava have to lose at this point? Let's stop the safe merry go round and jump on the roller coaster and search every avenue for her miracle. Even if that miracle isn't 100% SF, there has to be something that will help cut them back.

Hopefully the fresh set of eyes at NYU will help. Have you considered seeing a neuro there and having them push for the MEG? Perhaps if they become invested in her, they can help push the insurance company too?

You're all in my thoughts and prayers. I hope insurance comes through for you!

labonte4 said...

Jen, Elaine, D, and everyone else....thank you so much for your love, encouragement etc. I received a call from Dr. Neuro's nurse today (whom I might add...initiated the fight for this test on her own and backed it up with the ins. co.) to say that they agreed to cover it.

So NYU here we come. Jen, I'm with you on trying to somehow weasel my way in to NYU to have them take a good look at her. At this point..there is nothing to loose..we've tried almost EVERYTHING. This past admit was second to worst we've ever had.

Even though I'm scared about what the MEG may...or may not show....I'm pressing forward.

Sophie's Story by Elaine said...

In case you end up at NYU (which I really hope is sooner than later and that it won't be a huge fight), here is a link to a blog of a little boy that goes there...

http://medical-maze.blogspot.com/

Sophie's Story by Elaine said...

I didn't see your latest comment until I just posted mine. I am SO HAPPY that it wasn't a fight.

I know how much this test means and I will be thinking of you all.

JSmith5780 said...

YAY!!!!

Call NYU and see how long it would take to get in. A lot of people from our local support group go there (we are about 2.5 hours north). Dr Devinsky is the top but I hear great things about Dr Lajoie (a woman) and Dr Miles too.

baby trevor's mommy said...

Me-thinks this means you'll be required to post more often! ;)

...danielle

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.


So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.